Life with ‘Butterfly Skin’ – A Yazidi Girl’s Struggle with Epidermolysis Bullosa
In a small, dimly lit room with brightly painted walls, ten-year-old Maya sits quietly, her fragile, blistered skin almost camouflaged against the bold patterns of the cushions around her. Outside, life hums faintly, a stark contrast to the daily pain she endures.
Maya’s home is in a sprawling displacement camp, one of many that were originally set up to accommodate internally displaced people in northern Iraq. These temporary shelters have evolved over the years into semi-permanent homes. However, the camp still feels detached from the rest of society, isolated in a vast expanse of arid land.
Located near the city of Duhok in the Kurdistan Region of Iraq, the camp has been home to Maya and her family for several years since they fled their village in Sinjar, a district in the Nineveh Governorate. Sinjar, the traditional homeland of Iraq’s Yazidi community, was attacked by Islamic State militants in August 2014, who murdered thousands of Yazidi men and enslaved the women and girls. Like hundreds of thousands of Yazidis, Maya’s family was forcibly displaced. A decade later, they remain trapped in the camp, unable to return to their home.
Having spent almost her entire life in displacement, Maya suffers from Epidermolysis bullosa (EB), a rare and debilitating genetic skin disorder that makes her skin incredibly fragile. Even the slightest friction, such as a soft touch or a change of clothes, can cause her skin to form painful, liquid-filled blisters. As she plays or interacts with her surroundings, her skin can tear or burn, leaving open wounds that are slow to heal.
I first learned about Maya’s condition in August 2022, after a social media post by my friend Dr. Mohanad, an Iraqi pediatrician who has been helping Maya through his charity, Help Me Live. Dr. Mohanad’s organization provides medical support for displaced children like Maya, but resources are limited.
Due to her condition, Maya cannot walk, play with other children, or attend school. She spends her days in the same small room in the camp, where she is confined to a bed or mat, her body constantly wracked with pain. When I spoke to her family about her treatment, they told me that Maya’s only source of comfort is her mother. There is no medication that can fully alleviate her suffering, and her mother’s care – gentle, constant, and filled with love – is her only relief.
There is no cure for EB, but with proper treatment, the progression of the disease can be managed. Unfortunately, the necessary treatments – specialized dressings, wound care, and pain management – are costly. Given the severity of Maya’s condition, her family faces an overwhelming financial burden.
For Maya, and many other children in similar circumstances, the reality of life in the camp is one of uncertainty, isolation, and chronic pain. While the world moves on, Maya’s future remains at a standstill, tethered to a harsh and painful present.
Her story is a reminder of the deep scars left by conflict, not just on the land, but on the lives of the people caught in its wake.
WARNING: Some of the photos below are graphic and may be upsetting.
What is EB?
‘Epidermolysis bullosa, or EB, is the name of a large group of clinically and genetically different diseases. Their common feature is the formation of blisters. Blisters form from low mechanical stress on the skin and/or mucous membranes. There are a number of sub-types of Epidermolysis bullosa that differ due to the skin layer in which the blisters are formed and what exactly the genetic cause is.
The human skin consists of several layers. The epidermis is the outer most layer, which is the “outer skin”. “Bullosa” means “bubble-shaped” and “Lysis” solution. Therefore, Epidermolysis bullosa is literally called “bubble-like detachment of the epidermis”.’
In October 2022, I traveled to northern Iraq to meet Maya in person, and I was deeply moved by what I saw.
With Maya and her parents’ consent, I photographed her to raise awareness about her condition and help fund her urgent medical care. A few weeks earlier, I had launched a GoFundMe campaign with an initial goal of £3,000.
After sharing the photos on social media, the fundraiser quickly surpassed £7,500 within just 24 hours. As of now, it has reached over £10,000, a sum that will go a long way toward providing the dressings and specialized care Maya desperately needs.
Maya will need constant and ongoing treatment for life at an estimated cost of $1,500 per month, which includes special gauze strips and dressings, bandages and ointments to help alleviate her suffering and aid her skin in healing.
Inside the camp for internally displaced people where Maya lives.
In summer, Maya’s condition is exacerbated due to the extreme heat that’s impossible to escape in the camp due to limited access to electricity. In winter, she struggles to stay warm enough.
Maya sits with some of her siblings and other relatives who live in the camp.
If left untreated, Maya’s wounds would become infected, which could lead to potentially fatal sepsis.
When I asked Maya what toy she would love to have, she said a children’s car to ride around in. A shy smile crept across her face when Dr. Mohanad showed her a video of his son riding a small battery-powered car.
According to Dr. Mohanad, one of the most important things that Maya needs is something to do. “She’s had ten years without doing anything, just sitting,” he says. “She’s not even watching TV.. .She really needs something to do.”
In December 2022, I returned to Iraq to visit Maya and to deliver the funds raised. Thanks to the many generous donations, in addition to covering the cost of her treatment we were also able to buy her the battery-powered car she dreamt of having, as well as a few other small Christmas gifts.
For Maya, the car is more than just a toy — it’s her gateway to the outside world. With the pain from her condition making it difficult to walk, the car provides her with much-needed mobility, allowing her to join other children and experience a sense of freedom.
Watching her ride around with a radiant smile on her face brought tears to my eyes.
Maya’s father plays a musical instrument inside their home in the camp.
In June 2023, Dr. Mohanad and I visited Maya again and I’m happy to share the news that her condition has improved significantly since we began raising money for her medical care.
The generous donations we’ve received via GoFundMe have enabled us to provide the medical supplies she needs to treat the painful blisters that form on her extremely fragile skin. With ongoing and constant treatment, her condition can be managed, although sadly not cured, and she can have the chance to live a more comfortable life.
We were also able to provide her with an iPad and coloring books to help keep her engaged during the days since she cannot go to school.
Maya sits with Dr. Mohanad during our visit in June 2023.
I’ve been overwhelmed and moved by the compassionate and generous response to Maya’s fundraiser.
I’m reminded of the extraordinary power of photography in drawing attention to a particular issue or crisis, and sometimes translating emotions into actions that can have a positive impact.
A heartfelt thank you to everyone who has shared, supported and donated – your kindness and generosity has helped put a beautiful, bright smile on this little girl’s face.
We are continuing to raise money for Maya’s ongoing care.
Thank you.
